Old 12-04-2017, 05:35 AM #1 (permalink)
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Default RCH4 revisited again

I have been on the ALS drug RCH4 for the past 19 months and I am upset about the moderators comments which are most unfair to a charity who has provided both support and RCH4 free of charge worldwide for years.
The moderator here, Laurie, has locked two previous threads about this ALS drug, denying PALS the right of reply. It is the duty of a moderator to moderate and if wishing to air personal views must stand down as moderator and post comments as a normal contributor.

Laurie said:

No reputable agent,

The supplier is not an agent, they are a charity

needs to compare itself against another as shown in that page.

The page Laurie refers to is an unbiased comparison between the only drugs which work in ALS, and is a one-stop source of factual information on cost, efficacy, availability etc..
Riluzole, Edaravone & RCH4

She went on to say:

The Web site is rife with contradictions (90 vs. 25 pt years of dosing, etc. -- both tiny in terms of proven safety)

What the lady failed to mention was the information on the chart appearing on the web site are the words
"2016" and "90 patient-years treatment" "In ALS and another indication". No contradiction.
Their treatment is ongoing (not a clinical trial) so numbers change.
Actually their web site shows for 2017 35 years patient-years treatment which is exactly the same treatment experience on which the FDA granted Edaravone a marketing licence.

Laurie should refer herself to independent comments such as on the PLM forum:
https://www.patientslikeme.com/treat...28469#overview

Also I see that RCH4 currently is the most popular vote on ALS Untangled
ALSUntangled.com - Open Reviews

Laurie, please do not lock this thread as you have repeatedly done before and confine your activities to moderating instead if criticising that which you know nothing about.
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Old 12-04-2017, 06:49 AM #2 (permalink)
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Default Still here thanks to RCH4

I have been on RCH4 for the past 19 months and 4 and a half years into ALS, i can honestly say it has not only slowed my progression but I have had six months of stability. Whenever discussions are opened on this subject and Pals on this drug give their accounts, they are shot down by the moderator who takes it upon herself to close the discussion denying us the opportunity to respond
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Old 12-04-2017, 10:00 AM #3 (permalink)
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Default Re: Still here thanks to RCH4

Jenny-

I have looked at past posts about RCH4 and seen a fair amount of angry discourse. Is there a way for you to introduce this subject again without starting out with a targeted complaint about a particular moderator? I do see a lot of past angry posting and insults- which violates this forum's terms and should absolutely be shut down as a result. This subject seems to bring up a whole lot of anger and frustration each time it's introduced.

Is there new information about rch4 you wish to discuss?

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Old 12-04-2017, 11:21 AM #4 (permalink)
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Default Re: Still here thanks to RCH4

i think you will find the angry discourse was coming from a certain Eric Valor. I just wanted to say I’m doing well on this drug. Many of my pals friends have passed but I’m still here. It’s such a shame no one will listen to us pals taking this drug.. I will start another thread and see what happens. This forum Is abit one sided. It’s ok for Laurie to criticise RCH4 but we can’t respond
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Old 12-04-2017, 11:22 AM #5 (permalink)
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Default Re: Still here thanks to RCH4

Feel free to continue posting here. No need to start a new thread. I respectfully ask that people try to adhere to this forum's terms and not descend into insults aimed at other members. This appears to be a volatile subject.
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Old 12-04-2017, 11:51 AM #6 (permalink)
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Default RCH4 revisited again

I have been on RCH4 for the past 19 months and 4 and a half years into ALS, i can honestly say it has not only slowed my progression but I have had six months of stability which amazed my neurologist. I know of six other pals on RCH4 all doing well.
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Old 12-04-2017, 12:25 PM #7 (permalink)
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Default Re: RCH4 revisited again

Hello Stuart, I took a leap of faith in taking this drug. From the start, everything has been conducted in a professional manner. Every month I submit data to the RC group ie blood pressure, blood sugar, weight plus I answer questions relating to my ALSFR score. In
return, they send me a chart of my progress. I have never paid any money. I receive the drug every three months. Please understand why I am being cagey. Us pals who have defended RCH4 have been insulted on this forum. I am immensely grateful that I am able to take this drug. Why don’t you contact them yourself?
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Old 12-04-2017, 02:22 PM #8 (permalink)
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Default Re: Still here thanks to RCH4

Jenny great to hear from you!

Did you have the trach and vent put in, I think that was planned Nov last year?

6 months of stability is significant indeed. Are you in contact with others taking RCH4 and do you know if they are having similar effect? I know we lost one PALS not too long ago that was on it.

If you make this thread about your experience I would certainly think it will stay open, so please tell us what you can!
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Old 12-04-2017, 03:26 PM #9 (permalink)
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Default Re: RCH4 revisited again

Jenny, threads lock automatically after a period of inactivity -- naught to do with me.
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Old 12-04-2017, 04:05 PM #10 (permalink)
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Default Re: RCH4 revisited again

Jenny, one comment.

This website provides support for PALS such as yourself. Unlike some other "discussion" websites, our moderators don't just watch for violations of orderly conduct, we also provide a lot of advice in support of PALS. After all, the moderators here are all quite experienced with ALS. Some have it, some have lost spouses to it, and have proven to have helpful knowledge. In short, when you wrote:

"duty of a moderator to moderate and if wishing to air personal views must stand down as moderator and post comments as a normal contributor."

that was misinformed. The mods here are expected to provide comments whenever needed.

Hope this is cleared up for everyone.
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Old 12-04-2017, 04:57 PM #11 (permalink)
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Default Re: RCH4 revisited again

I had to complete a form but once I was accepted, I took about a week before I received the drug. I have it injected into my buttocks.
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Old 12-04-2017, 05:40 PM #12 (permalink)
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Default Re: Still here thanks to RCH4

Yes I did have the trach and vent in November 2016. I asked for it, i didn’t wnt to wait until it was an emergency. I had six months stability about a month in to my treatment. When I started the treatment, I had already lost my voice and had a peg fitted about six months previously. I also had breathing problems and was using the Bipap all night but couldn’t get on with it. I had 100% strength in my arms and legs. To date, I still have 100% strength in my legs, my arms and hands are weaker and my breathing is slightly worse than before the treatment but I can still breathe without the vent.
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Old 12-04-2017, 06:26 PM #13 (permalink)
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Default Re: Still here thanks to RCH4

That's wonderful news, Jenny. Thank you for coming back and reporting your success.

I vaguely remember several threads about RCH4 and didn't think it was available to PALS. Is it available. If so, how do we get it? I thought some of us tried to contact the company and received no response.

Are they selling it or donating it? I'm very interested.

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Old 12-04-2017, 06:28 PM #14 (permalink)
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Default Re: Still here thanks to RCH4

Mod note. Three threads merged. Some posts may appear out of order. Apologies.
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Old 12-04-2017, 07:20 PM #15 (permalink)
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Default Re: Still here thanks to RCH4

Thanks Jenny

May I ask, are you saying that you don't use the vent full time, but use it through the trach when you do?

This is significant that you still have full mobility and have had such a slowing of progression in all areas. I hope that other members on this treatment will report here too as it's such important information to share.
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